http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=7229
Sat, 07 Jan 2012 17:17:49 +0000PunBBhttp://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=54143#p54143
Wow, Mary. But you must know that Tom is looking and watching over his whole family. On the miscarriage note.....my Robin had Josh 23 years ago, then she and her husband (ex now) moved to Phoenix where he was from. She had 6 misses between Josh and Lexy (now 19) and then had Lexy, Kyle and Brandon! Turned out she had what they call Valley Fever out here and many newbies get it. It was causing the misses. No! You are not pathetic. Let's call it misthetic! We keep missing the boys.Byt he way, you can call me if you like when you feel like talking! Have a great weekend yourself.]]>Sat, 07 Jan 2012 17:17:49 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=54143#p54143http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=54139#p54139
Hi Lainey, I hope I didn't sound too pathetic. I'm glad you told me your brother-in-law was able to drive. I'll have a driver for two weeks and I already told my Doc I had to be able to hobble to my greenhouses by week three so I'm sure I'll be fine and mobile. I really don't have a choice! It's funny isn't it, but I honestly don't think I really looked at myself for the past year and a half, since Tom became really sick. What a surprise when you finally take a look! Where did all the gray hair, which I hide of course, and wrinkles come from? I guess we've all earned them for sure. I have to tell you the rest of the story from Tom calling my name the other night. I was sound asleep. I take Tylenol PM to help me sleep and for my knee pain. My youngest son Morgan, the adventurer, had decided to go for a night time bike ride to his friend's house about 10 miles away. He rides on a bike trail that goes through some pretty remote areas. He told me he would be home around midnight and it wasn't a very cold night so I didn't worry too much. Around 1:30 or 2 Tom's voice woke me right up. I actually sat up in be in a panic like I used to. Then I decided to go check and see if Morgan was home yet. He wasn't. It turns out that he was tired and decided to lay down on one of the benches along the trail, probably right about the same time Tom spoke to me and he fell asleep. He got home around 5 and told me where he had been and I couldn't believe it. I honestly think Tom was worried about him and tried to tell me something was wrong. He was dressed warm enough and it wasn't very cold, plus he's climbed mountains and camped out all over but we still worry all the time and that was Tom's way of telling me.It's actually very comforting because I told Tom I wanted him to be our kids guardian angel if he could. We always felt his mother was his. So I'm a believer too. I will tell you how things go next week with the support group. I'll probably end up just going once. It's just good to talk to someone. My oldest son does go to counseling through the VA and my daughter goes too because she's had so many miscarriages and now lost her Dad. They never really say whether it helps or not. Everybodies different. I think I will be a lot better once Spring is here and I'm busy again and have people around. These Ohio winters last forever! Take care and have a great weekend! Love, Mary]]>Sat, 07 Jan 2012 16:04:12 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=54139#p54139http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=54096#p54096
Dearest Mary, of course I would find your note!!! Mary, you can do it all, just little steps which you have already started to do, I am so proud of you. Next...you did hear Tom call you it was not a dream. I heard Teddy twice over the last year. It was just a faint voice but it was his and he said, Elaine, he hardley ever called me Lainy.I do not believe it was a dream. As for your knee you can do it. My brother-in-law in Dallas had the surgery in September and he drove himself to Therapy, just take it slow and easy. Humor me...on these long drives turn on your oldies radio station and see if any of your favorite songs as a couple come on. I am telling you, our songs were not the most popular and they seem to come on all the time. All these little things are major to us and it will give you such a feeling of comfort to feel he is around you. Seeing other couples never bother me as I still take the attitude that what I had for 16 years was more than most had in a lifetime. Talk about how we look now??? One morning I awoke looked in the mirror and wondered when my face turned in to a road map! I always had flawless skin! Never went in the sun and used cream every night. I feel like Mother Atlas! Guess I earned them but couldn't I have some other kind of award? I think the Hospice group may be good let me know how that goes. As for the boys, I am sure they are still hurting and perhaps it was good to let it fly a little. Emotional let go and they know you are still hurting and don't know what to do for you. Take care, I do think you are on the right path~]]>Fri, 06 Jan 2012 17:26:27 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=54096#p54096http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=54092#p54092
Lainey, I didn't want to take over Hans' post so I hope you read this. I'm sorry you're feeling so poorly.I hope you get better soon! It's funny that you wrote what you did about how taking care of yourself is helping to not miss Teddy so much. Just before Tom died my daughter commented that she had been looking through pictures before Tom's cancer and after and that it had obviously taken a toll on me. She didn't mean it to be negative, it was obvious the last few months in particular, that I was totally wiped out and hadn't had time to worry about my own health let alone my looks. Since, I've actually been sleeping a lot more ( with help). In fact probably too much but I don't want to be awake when it's dark and that is hard this time of year. I've been doing a little shopping, bought some new makeup, had my hair styled for a change, lost some weight and bought a few new outfits. I really just wanted to be out of the house and doing something but I feel better and actually have had people comment how good I look! I must have really looked bad! HA! Anyway, I was dealing with things a little better because I was preoccupied with a new project, me! I also wallpapered my dining room and am trying to get some cleaning done. The last few days though I've been a mess. I've had to go to Drs. and get an MRI and X-ray for my knee surgery and I sit in the waiting room with couples and it makes me so sad and sorry for myself that Tom isn't here to help me through all of this. I hate depending on my kids. My boys are still with me but Morgan is going back to Thailand two weeks after my surgery and Aaron finally got a job so will be gone quite a bit and and I'm trying to figure out how I'm going to drive 30 miles with a bad right knee to PT three times a week after Morgan leaves. It's crazy. I hate having to deal with this. I know all of you are in the same boat and it's really hard! My boys were fighting with each other yesterday and I just started crying. I told them I just wanted my old life back. I want their Dad to be here helping me and working with me and I don't want to depend on them. At least that calmed them down and made them behave a little better. They've actually been doing pretty good considering the fact they've both been on their own for years and are back living with Mom under the same roof! I actually took a happy pill yesterday because I couldn't get it together. I'm glad you feel Teddy with you. I have dreams about Tom, we're always doing something together but I"ve never really felt he was trying to communicate until last night. About 1:30 AM I heard his voice call my name. It was the same way he always did when something was wrong- he was really sick or his drain was leaking, etc. I woke right up in a panic and it took a few seconds to realize it was a dream. I just layed there trying to feel his presence but that was it. I'm hoping when I have surgery and am under anesthesia I'll have some kind of experience with him that I will remember. I'm going to a hospice support group next week. They're having a six week session starting Thurs. so I'm going to give it a try. I feel like it may help. We'll see. Take care of yourself. I hope you get well soon. Thanks for all of your support! I really appreciate it. Love, Mary]]>Fri, 06 Jan 2012 16:21:32 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=54092#p54092http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=53087#p53087
Mary, it is going to take time, everything is still raw. I feel anyone that could be a Care Taker to the person with CC that they love most in life can climb above anything...in time. Actually the hardest for me is over and that was Thanksgiving. Teddy would have his huge village up, the house was decorated by me on the inside (yes, the Jew) and the day after Thanksgiving 5 of us would decorate outside from 9AM - 5PM with a break for Margaritas. This year all was quiet. The first anniversary was actually ok. I kept telling myself that I would not pick a special day to be sad and mourn because I get sad here and there so don't need a special day. I worked on my final poem and that helped. All in all I did ok. I have come to the conclusion that we loved so very hard, you, Margaret, Devastated, Marion and I that we hurt hard as well. Actually this goes for any married couple who has had what we all had. On November 29th my Granddaughter drove back up to NAU at Flagstaff after our Thanksgiving weekend. I was out for dinner with my 3 guests from Milwaukee. My phone rang and I hear, "Grandma? It's Lexy. I just wanted to tell you that I have been thinking about Papa all the way back and I have about 40 miles to go and on my Ipod came a song, "I Am Watching Over You". I told her how wonderful and loved her Papa was that so many of us still feel sad and its OK. Then I told her to take one last important lesson from Papa. That is when the time comes for her to marry she marry a man who will puts her on a pedestal like Papa did me. She answered, "I already learned that from him, Grandma". Mary please try not to think so far ahead. Give yourself a break as you have enough on your plate for awhile. Just try to live your new normal and you will be happy again one day....because that is what your loving husband would want for you. I just know that the 3 T's (Teddy, Tom and Tom) are looking down on us and saying, Good job guys, we sure picked the right 3 women!!!!]]>Tue, 13 Dec 2011 16:45:59 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=53087#p53087http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=53085#p53085
Lainey, I hope you got through the "first" anniversary alright. That seems like a lifetime away to me right now. I know time will keep ticking away but I have to say I'm not looking forward to much right now. I actually am hoping that by 2014 things will be better. Next year will be very hard with surgeries etc. , then someone told me the second year is the worst, which my brothers are proving to be true, so it looks like it's going to be 2014 before I feel optimistic and maybe even happy again. What a pessimist I am. I actually do have some good days. I told my brothers that we all have good days , bad days and some in between and that seems to be the new normal.I guess we just have to look forward to the good days when they occur. Take care, Love Mary]]>Tue, 13 Dec 2011 15:53:41 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=53085#p53085http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=52589#p52589
Comin right over!]]>Thu, 01 Dec 2011 23:13:11 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=52589#p52589http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=52588#p52588
Lainey, It's the poem you sent above in your comments to me. It seems to be cut off in the middle. If you could e-mail it to me with your phone number that would be great. We're doing okay. The nights are the worst and the holidays! You know all about that. They gave me a candle with Tom's picture on it that I light everynight by my bed and I light one under his big picture that we blew up for his funeral. I'd like to get that one on here. It's a great picture of "farmer Tom". It just feels like he's closer that way. I'll be in touch. Love, Mary]]>Thu, 01 Dec 2011 23:08:37 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=52588#p52588http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=52513#p52513
Mary, what Peace you all had surrounding "Tom's Funeral" before and after....has to be a very important message in there for you all. The Meteor Shower....icing on the cake, how beautiful. Our guys really come through don't they?My daughter just posted some pictures from Thanksgiving on FB and I am trying to figure out how to transfer 2 of them here as we believe Teddy was here in one of the BIGGEST Orbs I have ever seen, right on a Grandson. For those who don't know or who have never seen an Orb in a picture it is fascinating! What poem are you talking about? They let me post any poem in it's entirety, guess they are afraid of cutting me off!!!:):) I made a promise to myself that I would post something every month for a year, on the 6th. I am all ready for the first anniversary Dec. 6th..last poem and final. If you tell me which one I will e mail it to you, and please feel free to contact me any time, I would love it. I am so here right with you!]]>Wed, 30 Nov 2011 14:03:28 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=52513#p52513http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=52505#p52505
Mary....this reads like a beautiful story of a wonderful day. And, so it was. Yes you and the boys will be fine - you will get there....one day at a time.Love right back at you,Marion]]>Wed, 30 Nov 2011 09:16:23 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=52505#p52505http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=52504#p52504
Mary,

I am sad to see this news and so sorry for your loss. Tom struggled mightily and you were right there beside him through the ups and downs. You say the credit is all his but as a librarian I say everyone has a book in them and you surely could write one on caregiving and the support and information you have provided others on this board is a selfless gift.

I am glad you were able to share those years together and know that you and your children and grandchildren will cherish them. I saw this quote yesterday and it really resonated with me:

Grief is, in a sense, the bill that comes due for love. ~George Saunders

My take on it is that when we choose to love we risk sadness, yet people choose to love every day so the risk must be worth taking.

Visit us for support when you feel the need, we are here.

Patty

]]>Wed, 30 Nov 2011 06:39:59 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=52504#p52504http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=52412#p52412
Mary, so sorry for your loss. What a fighter! I know how you feel, just losing my Mom. She was diagnosed in July & passed 2 months yesterday. Hard to believe it is already 2 months. I know what you mean when you say you were a wife and a nurse. I was a daughter and a nurse as well. I spent every evening with her since she started getting sick. Also searched endlessly on the internet and this site for as much info I could absorb. Her passing was of course awful, but a relief as well. I really didn't know what to do after she left us. I was always, this summer, doing anything I could to help her & help her fight this terrible disease. We scattered some of her ashes yesterday in a beautiful river in SC that leads to the ocean. She loved vacationing there. We would all fish & crab on that dock. It was (& still will be) our family spot. God bless you & your family. This site has helped me heal & I know it is helping you too. Praying for a cure every day.Pam]]>Mon, 28 Nov 2011 18:44:43 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=52412#p52412http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=52408#p52408
okay, the site is giving me fits too today. Anyway, the minister read letters that Sarah wrote and that I wrote and his very talented choir director played the piano. We had a great turnout too but because of the holidays some of our friends and relatives were out of town. The weather was beautiful though. My three boys went up to the dam of a lake just a few miles from our home the night Tom died and they saw a fantastic metoer shower. They told about that at the funeral and others there said they saw it too. I went out and sat and swang on our beautiful swing Tom made for the kids the night after he died from about 4am until dawn. It was so peaceful and warm for Nov., there was just a soft breeze in our big old maple trees. I felt his presence and I know my boys felt the shower was a sign even though they don't necessarily believe all of that. I think we'll be fine in time. Like so many said at his funeral, no matter how sick Tom was he always said he was fine , great or wonderful! I guess we will have to be too. Thanks everyone and Lainey if the site doesn't put your entire poem you sent me could you e-mail it to me? I loved it. I'm going to call you one of these days!! LOve MAry]]>Mon, 28 Nov 2011 17:56:14 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=52408#p52408http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=52407#p52407
We've made it through the hardest part with my Tom's calling hours on Fri. and service on Sat. Everything was perfect. Tom told me to do what I wanted and I think he would have been happy. My Tom was a great singer like Teddy. He did musical theater in his youth, sang in the Ohio Youth choir throughout Europe when he was 16 and in church choirs the past 20 years. In 1993 his Dad, himself and 3 brothers did a mini-concert at church that my sister-in-law recorded but I had never seen. I was laying awake the Sun after he died thinking of the service and decided to call her and see if she still had the video. She did so we played it in the middle of the service. They were so good, no one had a dry eye but it was really special. We also had a family party video from 1986 where Tom and his brothers played guitar and sang while all of our kids ran around playing their toy guitars etc. We played that during the calling hour before the service. After the service my best girlfriend came up to me and said "leave it to Tom to figure out a way to sing at his own funeral!!" That was great. My 2 son's and stepson were unbelievable strong and each got up and eulogized their Dad and my daughter and I wrote]]>Mon, 28 Nov 2011 17:47:20 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=52407#p52407http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=52254#p52254
Mary, I am so sorry you lost Tom. He will always be with you. You were an amazing wife and took great care of him.]]>Fri, 25 Nov 2011 14:44:32 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=52254#p52254